Ellie has Dysautonomia also called Autonomic Dysregulation. This means that her Autonomic bodily functions (breathing, heartrate, blood pressure, TEMPERATURE) etc get out of whack. Her body has a hard time regulating them like they should. This is due to her brain be malformed/under-developed/etc...
History
When she was little and we used to go camping she used to always drop her heart-rate during the night. I could never figure out why she would only do this while we were camping.
Later on I figured out it was because she was cold. Her temperature and heart-rate are best friends. If one is low, the other is usually low and vice-versa.
So back to the camping example...she was getting cold and her heart-rate was dropping...but I didn't know it at the time, so I was never checking her temperature.
Current Day
All day, every day her temperature is something we need to have in the back of our mind.
Her normal body temperature is 93F-95.5F. We found this by logging her temp every several hours for several days while she was fairly healthy and found out what is NORMAL for her.
Her normal heartrate awake will be 70's to mid 90's. When her temp drops then her heart-rate will drop to the 40's or 50's. I have even seen it in the 30's. If her temp is below 70 it means take her temp.
The lowest I have seen her temp is 86F. (yes...the Dr.'s were freaking out...ha ha! Funny looking back...not funny then).
We carry and thermometer and electric blanket everywhere.
A lot of time instead of getting a fever she will get a low body temperature (which can actually be more dhan a fever).
She can get a fever, but it more common for her to get a low temp when she is sick. I have seen her temp as high as 106F. This was when we accidentally left the electric blanket on her on high all night long. whoops. We forgot to turn it off.
Hypot
Hypothermia Thermometers
Most thermometers will only measure down to abou. Most thermometers will only measure down to 91 or 92 F and won't work to measure lower than that. Even the ones in the hospital will not measure that cold. purchased a hypothermia thermometer from Amazon and carry it with her at ALL TIMES. I originally purchased an ear and a rectal/armpit thermometer that were both hypothermia thermometers. But I found that the ear one didn't work well on her due to ear wax and lots of ear infections.
Most thermometers will only measure down to abou. Most thermometers will only measure down to 91 or 92 F and won't work to measure lower than that. Even the ones in the hospital will not measure that cold. purchased a hypothermia thermometer from Amazon and carry it with her at ALL TIMES. I originally purchased an ear and a rectal/armpit thermometer that were both hypothermia thermometers. But I found that the ear one didn't work well on her due to ear wax and lots of ear infections.
Typically when she drops it will be into the 91 F range. M
.
This is the hypothermia thermometer I originally purchased. https://www.amazon.com/Veridian-08-308-10-second-Hypothermia-Thermometer/dp/B003SLPTIG/ref=sr_1_3_a_it?ie=UTF8&qid=1529445493&sr=8-3&keywords=hypothermia+thermometer
This is the hypothermia thermometers they use at my local children's hospital.
https://www.amazon.com/ADC-Adtemp-Hypothermia-Thermometer-Adtemp-419/dp/B000RN15B8/ref=sr_1_1_a_it?ie=UTF8&qid=1529445493&sr=8-1&keywords=hypothermia+thermometer
They both work great.
So I currently only do armpit temps. Like I said...I didn't feel like ear temps work well for her. When we really want an accurate temp we will do rectal. But this is usually only when she is inpatient and her temp is really low.
Action Plan
When we see a low temp or low heart-rate these are the steps we take...
If she is scheduled to get a shower, we will give her a warm bath instead of a shower. We will take her temp about every 15 minutes until it gets into her low normal range. (We want to stop at her low normal because if we waited until her high normal the temp will keep going up for a while. So if we wait until we get to her high normal, then we are going to overshoot and make her too hot.) A warm bath is the fastest way to bring her temp up. We can bring it up from 90's to 93 or 94 within an hour.
If it is not shower day then we do the electric blanket with several layers of thick normal blanket on top of the electric blanket to trap the heat. She warms up faster with her clothes off. If she keeps the clothes on it insulates her against the heat from the electric blanket. If she is in public/school we do not take her clothes off. The electric blanket can warm her up about 1 degree per hour.
Showers
We always take temp before giving a shower so we know if we need to give a bath instead. She will cool off about 1 degree by taking a shower. We always blow dry her hair right after getting out of the shower I don't want her temp to drop even lower.
Clothes
She pretty much wears pants, socks and long sleeve shirts year round. There are only a few months in summer when she can get by with shorts and short sleeves. We always have additional layers and additional blankets and hats with us at all times.
Timer
We ALWAYS use a timer with the electric blanket to turn it off automatically (after we had the experience of 106F temp that one time we have always used a timer). Here is an example of a timer. Do not get one that you have to set the time of day...just get a simple one that you choose how long you want something on for and then it will shut off. https://www.amazon.com/Century-Digital-Countdown-Repeat-Function/dp/B01D3QEK4E/ref=sr_1_38?ie=UTF8&qid=1529446696&sr=8-38&keywords=appliance+timer+1+hour
Ellie tolerates the electric blanket on high for 1 hour straight and then I give her 20 minutes off. Then an hour on and repeat until up to temperature.
Charts
I have a chart of what works for Ellie it looks something like this... (different charts for different settings)
Inpatient
92.9F or lower she needs the bair hugger. Have bair hugger on her with 1 bath sheet over top of the bair hugger. Leave on high for 20 minutes. Recheck temp. Leave Bair hugger on her, but turn off for 20 minutes. Repeat until temp reaches 94.4 F
93F-95.5 Normal Range
95.6-96.5 Remove socks. Change into shorts. Remove blankets. Wipe legs/arms/face with a wet cloth. Give Ibuprofen or Acetaminophfen.
96.6-99.9 Low Grade fever. Give Ibuprofen or Acetaminofen. Call Mom. Give ice bath. Lay her on chux on her bed. Fill basin with water and add ice. Put washcloths in the water. Lay 1 washcloth in each of the following places...1 per leg, 1 on belly, one on clest, 1 on neck. On on forehead. 1 in each armpit. Have extra washcloths and just keep constantly rotating them. Stop when you get to 95F
School
90.4 or lower call 911 and go to emergency room. Call Mom.
90.5-92.9F or lower. Call Mom. Lay her down (she warms up better laying down than sitting up).Put electric blanket on with another blanket over top. Turn electric blanket on for 1 hour. Then turn off for 20 minutes and repeat until temp is within normal range.
93F-95.5 Normal Range
95.6-96.5 Remove socks. Change into shorts. Remove blankets. Use a fan if available. Wipe legs/arms/face with a wet cloth. Give Ibuprofen or Acetaminophfen.
96.6-99.9 Low Grade fever. Give Ibuprofen or Acetaminofen. Call Mom to pick her up. Mom will give her ice bath at home.
Home
90.4 or lower call 911 and go to emergency room. Call Mom.
90.5-92.9F or lower. Call Mom. Give warm bath if possible. Take temp every 15 minutes until in low normal range.
If bath is not possible...Lay her down (she warms up better laying down than sitting up).Put electric blanket on with another blanket over top. Turn electric blanket on for 1 hour. Then turn off for 20 minutes and repeat until temp is within low normal range.
93F-95.5 Normal Range
95.6-96.5 Remove socks. Change into shorts. Remove blankets. Use a fan or room AC if available. Wipe legs/arms/face with a wet cloth. Give Ibuprofen or Acetaminophfen.
96.6-99.9 Low Grade fever. Give Ibuprofen or Acetaminofen. Call Mom. Give ice bath. Lay her on chux on her bed. Fill basin with water and add ice. Put washcloths in the water. Lay 1 washcloth in each of the following places...1 per leg, 1 on belly, one on clest, 1 on neck. On on forehead. 1 in each armpit. Have extra washcloths and just keep constantly rotating them. Stop when you get to 95F
Brand of Electric Blanket
The type of electric blanket I like is called Biddeford. You can buy them at Target in the winter months for about $40 for a twin size. They are more expensive on Amazon. The reason these are better than Sunbeam or any other brand is the warranty. Sunbeam is a limited 1 year warranty and you have to save your receipt. With Biddeford it is a LIFETIME warranty. And you do not need to register the product or keep your receipt. You just call them and say it is not working. They give you a return # to include when you ship it back. It costs about $9 to ship it back to them. But they will send you a replacement for free (other than that $9 shipping to send it to them). They will keep doing this over and over and over. https://www.amazon.com/Biddeford-2020-905291-700-Electric-MicroPlush-Blanket/dp/B00DN6SRJO/ref=sr_1_9?ie=UTF8&qid=1529447115&sr=8-9&keywords=biddeford+electric+blanket
Conversion Chart
I created my own temperature conversion chart from celcius into farenheit. I take this with me when she goes inpatient. The nurses only speak celcius and their printed conversion charts don't go cold enough to translate Ellie's low body temps... haha! I will post the printed chart on her wall in her room.
Bair Hugger
I looked extensively at trying to get a bair hugger like they have at the hospital or warming lamps. But I was unsuccessful. What I found out was they are regulated by the FDA and can only be sold to medical facilities. There is not even a way to get one from DME/Homecare. THey cannot be used in the home. The one workaround idea I found (but never did) was that vetrinarians also use baer huggers and these ones are not regulated by the FDA. As far as I can tell you should be able to purchase one made for a vet. ha ha!
Other warming options
You can warm up their formula and put it into their belly. Just make sure it is not too hot. This would be like drinking hot chocolate when you are cold. I have done this before, but do not do it regularly.
There are also warming beds and cushions and vests I have not tried any of these. Here are some examples...
Warming Bed (aqua bed) https://www.amazon.com/Aqua-Bed-Warmer-Non-electric-Blanket/dp/B00O145IUI?th=1
Lots of aftermarket massaging heat cushions for cars have a heat function
You can always use microwave rice bags or hot water bottles too...but they tend to be small.
There are also electric mattress pads...but due to peeing accidents these have not been a good option for Ellie.
What other questions do you have? What have you found helps you when you are cold? Comment below. Like our FB page for future posts. https://www.facebook.com/SupportedInOurTrials/
You can always use microwave rice bags or hot water bottles too...but they tend to be small.
There are also electric mattress pads...but due to peeing accidents these have not been a good option for Ellie.
What other questions do you have? What have you found helps you when you are cold? Comment below. Like our FB page for future posts. https://www.facebook.com/SupportedInOurTrials/
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